Table 2.

Category One: Barriers to Accessing End-of-Life Care

Theme 1: Structural barriers to care outside of the healthcare systemThe government initiated preference seems to be in home services. However, the in-home service hours allotted to a dying individual seems to be a few hours per day; thus, putting the onus on family members. Unfortunately, homeless people do not have a home and they often lack family members who can help them. Also, homeless people may not know how to access end-of-life services and they may not have a primary health practitioner. (SR)
[the shelter system is] phenomenal and by no means am I saying that they're not doing great work. But the first thing that the case worker said to me when I was talking about this medical bed and would it be available for someone who was dying. They specifically said like yeah but we don't want them dying here. (KI 6)
I have a gentleman who has cancer and was told that he can't get treatment until he gets housing. So, how is that helpful? What if he was an individual that didn't want housing? So, you're never going to get treatment just because you choose that you don't want housing. That's not OK. (KI 2)
Her being in a hospital would mean her friends really couldn't come and stay because they would act inappropriately. There'd be a security person called. They'd be removed. I mean, this is the difficulty. So, she would really be cutting herself off, I think, from that sense of “I'm around the people who I love”. (KI 4)
Theme 2: Systemic barriers to care within the healthcare systemHe was lonely. People that would ah that were kind of familiar with him, that would check on him and stuff for people, that kind of were part of that community and lived in the area, so it was easier for them, you know, with the lack of transportation to go and check up on him at his home. But then being transferred to [institution]—nobody could really access it or people that wanted to, had had such a negative experiences with main stream health care in the first place didn't want to be in that environment. (KI 1)
Depending on situation and substance used by specific patient and history of said use. If patient is actively using illicit substances and is regularly intoxicated during clinical encounters, there may be challenges related to communication, compliance, and arranging appropriate follow-up, along with financial challenges related to access, transportation, equipment, and medication costs (SR)
Many community programs are “home care” programs—meaning you require a “home” to receive care. (SR)
Theme 3: Care avoidanceAh I think there's also, the other problem being the trust. They don't really trust the health care system because they haven't had best dealings for the most part with them, either hospital staff or physicians, and aren't as willing to follow through. (KI 7)
A person who is marginalized or substance using or are homeless just may not be able to focus on managing their illness because they're too busy focusing on the day to day stuff. Where they're going to stay. What they're going to eat. What they do for funding. That sort of thing. Being able to kind of see the long term is sometimes difficult and palliative care is partly about planning for that. […] So, you know, I think generally what happens is they get sick to the point that they can't manage and then they end up in hospital and that's when they'll receive their palliative care support. (KI 1)
Addiction usually takes precedence over all other life choices. Acknowledging and incorporating drug use into end-of-life care in my opinion would increase engagement of these services. Banning drug use as a requirement for participation in these services would be a huge barrier to engagement. (SR)
Theme 4: Stigma as a barrierI had a client that was palliative that would call every day crying saying that he could hear the staff talking about him (KI 1)
We're actually supporting a very young individual who is dying currently with very limited palliative resources that he is comfortable accessing. So it's not necessarily that they're not there, but when you use [substances] several times a day, you go to the hospital and they're not giving you the proper medication to keep you comfortable because your tolerance is so high. So you leave the hospital, but then they discharge you because you left against medical advice. So then they don't want to go back. It's kind of the cycle that that we've seen um with other clients in the past (KI 6)
We have heard of tenants who have gone, you know, into the hospital for tests and have been refused service because they were told they smelled. (KI 5)
I can't fathom how difficult it must be to be trying to do your triage work in emergency. Already demanding and then throw somebody who comes in, you know, high on crystal meth. I make no criticism; however, I think that's a big problem. I'll share a story that was shared with me. [This woman] had suffered a brutal rape. Horrific. Absolutely horrific. She was a woman in her late 40s. Lived on the street throughout her whole life, back and forth. She was telling me her story. She needed to share it […] and she didn't cry. Not one tear when she talked about the abuse that she endured [..]. She wept when she talked about how she got treated at the hospital because she was bleeding so profusely and she flinched at a needle and the comment from the nurse was made to her: “Well look at your arms, as if you have a problem with needles”. That weighed so heavily and this is when the woman broke down. The abuse was horrific but she had almost been marinating in that level of violence and abuse all her life. The devastating part of it all was the shame she felt from the hospital. I just I remember thinking: Holy smokes. Do we ever have a problem here? If what this man did to her- horrify and it's certainly impactful on her but that's not what broke her. What broke her was being so dismissed in hospital because of her I.V. drug use. Yeah. So, you know that's an example of an off the cuff remark made by somebody who I guarantee you had no intention of hurting a woman. (KI 4)
So it starts off a negative experience right from the get-go. And generally people don't even stay. I had a client years ago that ended up ah being very unwell. I took him to the hospital. I stayed with him which was fine. People generally are nicer if you have somebody to advocate for them. But as soon as he was admitted into the hospital he ah was treated very poorly by staff. He ended up leaving and he ended up dying in [name of] park by himself. (KI 10)
  • KI, key informant; SR, survey respondent.